Liabilities / Assets
42nd percentile
Higher debt load relative to assets than 42% of similar nonprofits.
Hereditary Angioedema Association Inc.
990 • Fiscal year 2015 • EIN 25-1852548
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.12x
Liabilities / Revenue
43rd percentile
Higher debt load relative to revenue than 43% of similar nonprofits.
Net Margin
70th percentile
Higher net margin than 70% of similar nonprofits.
Top Officer Pay
72nd percentile
Higher top officer pay than 72% of similar nonprofits.
Top officer pay equals 3.3% of source-year revenue.
Asset Growth
74th percentile
Faster asset growth than 74% of similar nonprofits.
Revenue Growth
95th percentile
Faster revenue growth than 95% of similar nonprofits.
Balance Sheet
Assets
Up$6,266,333
Up $541,463 (+9.5%) from 2014
Net Assets
Up$5,522,656
Up $593,997 (+12%) from 2014
Liabilities
Down$743,677
Down $52,534 (-6.6%) from 2014
Revenue And Expenses
Revenue
Up$5,409,526
Up $2,950,008 (+120%) from 2014
Expenses
Up$4,815,529
Up $2,197,577 (+84%) from 2014
Net Income
Up$593,997
Up $752,431 (+475%) from 2014
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2015 to Dec 31, 2015
- Signed
- Nov 14, 2016
- Return Version
- 2015v2.1
- Gross Receipts
- $5,409,526
Mission and Program Overview
Mission
To provide a variety of services to help patients cope with hereditary angioedema, and foster research, patient education, and access to and reimbursement for new therapies.
SEE SCHEDULE O COMMENT.
Balance Sheet Detail
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $4,835,900 | $5,937,486 | ▲ $1,101,586 |
| Cash and Non-Interest-Bearing Accounts | $528,637 | $259,280 | ▼ $269,357 |
| Accounts Receivable | $354,000 | $37,587 | ▼ $316,413 |
| Receivables From Officers Etc | - | $29,000 | - |
| Land, Buildings, and Equipment, Net | $6,333 | $2,980 | ▼ $3,353 |
| Total Assets | $5,724,870 | $6,266,333 | ▲ $541,463 |
| Liabilities | |||
| Other Liabilities | $360,000 | $682,728 | ▲ $322,728 |
| Deferred Revenue | $375,000 | - | - |
| Accounts Payable and Accrued Expenses | $61,211 | $60,949 | ▼ $262 |
| Total Liabilities | $796,211 | $743,677 | ▼ $52,534 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $4,805,547 | $5,429,661 | ▲ $624,114 |
| Temporarily Rstr Net Assets | $123,112 | $92,995 | ▼ $30,117 |
| Total Net Assets Fund Balance | $4,928,659 | $5,522,656 | ▲ $593,997 |
| Total Liabilities and Net Assets / Fund Balance | $5,724,870 | $6,266,333 | ▲ $541,463 |
Asset Categories
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $2,980 | $24,614 | $27,594 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Anthony Castaldo | President | FT | $177,853 | $5,000 | $177,853 |
| Janet Long | Executive Vice President | FT | $164,594 | - | $169,594 |
| Donna Davis | VP Patient & Clinical Service | FT | $130,387 | - | $130,387 |
| Larry Salus | Directorfinancial Director | PT | $42,513 | - | $42,513 |
Board Members and Trustees
| Name | Title |
|---|---|
| Christopher Whalen | Director |
| Dr Eric Phillips | Director |
| Herick Balle Boysen | Director |
| Karen Baird | Director |
Highest Paid Contractors
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| King Biologistics | Business Developme | 27 BROOK STREET, Jamestown, RI 02836 | $117,600 |
| Global Patient Strategies LLC | Scientific Registe | 27 BROOK STREET, Jamestown, RI 02836 | $105,000 |
Revenue and Support
Revenue Composition
- Contributions and Grants
- $5,382,221
- Program Service Revenue
- $0
- Investment Income
- $27,305
- Other Revenue
- $0
- All Other Contributions
- $5,382,221
- Change in Net Assets
- $593,997
Audited Revenue Reconciliation
- Revenue per Audited Statements
- $5,409,526
- Total Revenue per Audited Statements
- $5,409,526
- Total Revenue per Form 990
- $5,409,526
Expenses and Functional Allocation
Major Expense Lines
| Line Item | Amount |
|---|---|
| Other Expenses | $2,211,379 |
| Salaries, Compensation, and Employee Benefits | $1,400,454 |
| Grants and Similar Amounts Paid | $1,203,696 |
| Professional Fundraising Fees | $0 |
| Total Fundraising Expense | $0 |
Functional Expense Allocation
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Orgs | $1,203,696 | - | - | $1,203,696 |
| Conferences and Meetings | $888,269 | - | - | $888,269 |
| Other Salaries and Wages | $682,570 | $23,495 | - | $706,065 |
| Current Officers, Directors, Trustees, and Key Employees | $451,155 | $69,191 | - | $520,346 |
| All Other Expenses | $313,511 | $11,940 | - | $325,451 |
| Advertising | $176,397 | - | - | $176,397 |
| Fees for Services Other | $51,738 | $99,856 | - | $151,594 |
| Travel | $142,805 | $7,517 | - | $150,322 |
| Payroll Taxes | $82,937 | $6,780 | - | $89,717 |
| Other Employee Benefits | $77,953 | $6,373 | - | $84,326 |
| Other Expenses | $83,366 | $5,127 | - | $83,366 |
| Office Expenses | - | $28,341 | - | $28,341 |
| Information Technology | - | $15,393 | - | $15,393 |
| Insurance | $7,544 | $838 | - | $8,382 |
| Fees for Services Legal | - | $5,681 | - | $5,681 |
| Depreciation Depletion | $2,850 | $503 | - | $3,353 |
| Occupancy | $1,413 | $249 | - | $1,662 |
| Total Functional Expenses | $4,534,245 | $281,284 | $0 | $4,815,529 |
Audited Expense Reconciliation
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $4,815,529 |
| Total Expenses per Audited Statements | $4,815,529 |
| Total Expenses per Form 990 | $4,815,529 |
International Activity
Grant and Assistance Recipients
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Uc San Diego Foundation | La Jolla, CA | 501c3 | Research & Medicine | $1,203,696 |
Fundraising, Events, and Gaming
- Fundraising activities
- No
- Gaming activities
- No
- Professional fundraiser used
- No
Fundraising and Gaming Totals
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
Political and Lobbying Activity
- Political campaign activity
- No
- Lobbying activity
- Yes
- Subject to proxy tax
- No
Insider Transactions and Loans
Loans and Receivables
| Line Item | Beginning | End | Change |
|---|---|---|---|
| Receivables from Officers, Directors, Trustees, and Key Employees | - | $29,000 | - |
Debt and Bond Financing
Other Reported Liabilities
| Liability | Amount |
|---|---|
| Pledge to Univ Cali San Diego Fou | $682,728 |
Governance and Compliance
Governance Checklist
- Compiled or reviewed by an accountant
- No
- Annual disclosure for covered persons
- Yes
- Audit committee
- No
- Backup withholding compliance
- Yes
- Business relationship with family members
- No
- Business relationship with organization members
- No
- Material changes to governing documents
- No
- Compensation from other sources disclosed
- No
- CEO compensation reviewed
- Yes
- Other officer compensation reviewed
- Yes
- Conflict-of-interest policy
- Yes
- Audited financial statements prepared
- No
- Key decisions subject to board approval
- No
- Management duties delegated
- No
Governance Explanations
Form 990 governing body review Part VI line 11
“The president and exec. Vp are assigned responsibility for review and approval of the federal form 990 with the support of the financial director. The board of directors affirms the filing provided.”
Conflict of interest policy compliance Part VI line 12C
“The board of directors provide self-declarations of possible conflicts of interest as part of the annual meeting responsibilites. Key employees also provide an annual self-declaration. Potential conflicts identified are reviewed and approved if appropriate as a part of the board of directors routine responsibilties.”
CEO executive director top management comp Part VI line 15A
“The president, with support of the board of directors, performs an informal review of key manager salaries for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Other officer or key employee compensation Part VI line 15B
“The president, with support of the board of directors, performs an informal review of key manager salaries for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Governing documents etc available to public Part VI line 19
“The organization makes all federal information filings available upon request. Various companies make the federal filings available via the internet.”
Filing and Contact Details
Filer
- Filer Name
- Hereditary Angioedema Association Inc
- EIN
- 25-1852548
- Address
- 10560 MAIN STREET, Fairfax, VA 22030
Signing Officer
- Name
- Larry Salus
- Title
- Financial Direc
- Phone
- 8665808178
- Signed
- 2016-11-14
- Discuss with paid preparer
- Yes
Organization Details
- Principal Officer
- Anthony Castaldo
- Formed
- 2005
- Legal Domicile
- Va
- Voting Board Members
- 6
- Independent Board Members
- 2
- Employees
- 16
- Volunteers
- 600
Preparer
- Firm
- Allan Smith & Company CPAs PC
- Address
- Two Cabot Place Suite 8, Stoughton, MA 02072
- Preparer
- Allan Smith
- Phone
- 7742065553
Supplemental Narrative
Additional Explanations
General explanation attachment
“PART III: Briefly describe the organizations missionThe Hereditary Angioedema Associations (HAEA) overall goal is to be the force behind (1) thwarting the potentially fatal and debilitating nature of the HAE, and (2) enabling our patient community to achieve life long health. We are a national patient advocacy organization that focuses on: Increasing HAE awareness and education; driving progress in clinical care; helping patients gain access to and reimbursement for optimal treatment; maintaining a strong presence in the health policy legislative and regulatory environments; and fostering molecular level and translational research that features searching for a cure.”
Raw XML AppendixShowing 400 of 489 raw XML fields
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
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| IRS990/Desc | 0 | TO INCREASE AWARENESS OF HEREDITARY ANGIOEDEMA AND PROVIDE PATIENTS AND PHYSICIANS WITH INFORMATION ON BEST PRACTICES FOR HAE DIAGNOSIS AND TREATMENT THROUGH EDUCATIONAL VIDEO PROGRAMS, AN HAE WEBSITE AND PRINTED MATERIALS. THE HAEA IS A STANUCH ADVOCATE FOR (1) PATIENT ACCESS AND SUFFICIENT INSURANCE REIMBURSEMENT FOR CURRENTLY AVAILABLE THERAPIES, AND (2) RESEARCH DIRECTED TOWARDS HELPING PATIENTS LEAD A NORMAL LIFE AND, ULTIMATELY, FINDING A CURE. THE HAEA ALSO CONDUCTS NATIONAL AND REGIONAL PATIENT MEETINGS AND OFFERS A VARIETY OF SERVICES TO INDIVIDUALS AND FAMILIES THAT INCLUDE PHYSICIAN AND CLINICAL TRIAL REFERRALS AND ASSISTANCE IN DEALING WITH DISEASE-RELATED EMERGENCIES. |
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| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | Overall, the HAEA is a highly effective rare disease patient advocacy organization that is directly responsible for saving countless lives and dramatically improving the health and well being of our patient community. In accordance with a Board of Directors-endorsed plan (and associated operational procedures) the HAEA continuously solicits broad public support for its life saving mission. Indeed, our Board of Directors and highly motivated staff constantly search for innovative approaches to increasing general public support despite inherent limitations. The reality is that HAE is a little known micro-orphan rare disease with an extremely small number of patients residing in the United States. Moreover, the target population for soliciting financial support is exceptionally limited and, in many cases, disabled by the disease. Notwithstanding these challenges, the HAEA receives a surprisingly large percentage of its funding from public sources. Our successful nationwide HAE-in-Motion 5k walk/run program and broad based promotion and support of patient-sponsored HAE Day events is evidence of our commitment to a robust public fund raising program. We rely heavily on public fund raising for (1) maintaining our scientific patient registry, which provides researchers with the data needed to unlock some of the medical mysteries that will ultimately a cure for the disease, (2) maintaining a Benevolence Fund for assisting patients with complex angioedema cases who travel to our Angioedema Center at the University of California at San Diego, and (3) our scholarship program that helps students with HAE pay for their college tuition. The HAEA offers a wide variety of programs and activities that help patients obtain a timely diagnosis and then get access to and reimbursement for life saving HAE therapies. We educate and raise awareness by disseminating disease-related information (to patients and physicians) through our web page, social media outlets, medical advisory board, and national meetings that attract upwards of 800 patients and caregivers. Physician and clinical trial referrals are given a very high priority. Finally, our expert physicians at the HAEA Angioedema Center set the standard for expert HAE patient care in the United States and conduct groundbreaking molecular and translational research. |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | 10 Facts and Circumstances Test Part II line 17a or 17b |
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| IRS990ScheduleC/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION WORKS TOWARDS INCREASING AWARENESS OF THE HEREDITARY ANGIOEDEMA DISEASE THROUGH EDUCATION AND ADVOCACY IN SUPPORT OF EXPANDED RESEARCH, PATIENT EDUCATION AND ACCESS TO AND REIMBURSEMENT FOR NEW THERAPIES. POLITICAL ADVOCACY EFFORTS ARE CENTERED AROUND THIS MISSION. |
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| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | PLEDGE TO UNIV CALI SAN DIEGO FOU |
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| IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION IS COMMITTED TO ADVANCING AND FACILITATING CLINICAL RESEARCH DESIGNED TO IMPROVE THE LIVES OF HEREDITARY ANGIOEDEMA PATIENTS AND ULTIMATELY FIND A CURE. IN SUPPORT OF ITS COMMITMENT TO CLINICAL RESEARCH, BEGINNING IN 2012 AND THROUGH THE DATE OF THE FINANCIAL STATEMENTS, THE ORGANIZATION HAS COMMITTED OR PAID MORE THAN FIVE MILLION THREE HUNDRED THIRTY THOUSAND DOLLARS TO THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO TO EXPAND AND ENHANCE RESERACH INITIATIVES FOCUSED ON THIS GENETIC CONDITION. |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | THE PRESIDENT AND EXEC. VP ARE ASSIGNED RESPONSIBILITY FOR REVIEW AND APPROVAL OF THE FEDERAL FORM 990 WITH THE SUPPORT OF THE FINANCIAL DIRECTOR. THE BOARD OF DIRECTORS AFFIRMS THE FILING PROVIDED. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | THE BOARD OF DIRECTORS PROVIDE SELF-DECLARATIONS OF POSSIBLE CONFLICTS OF INTEREST AS PART OF THE ANNUAL MEETING RESPONSIBILITES. KEY EMPLOYEES ALSO PROVIDE AN ANNUAL SELF-DECLARATION. POTENTIAL CONFLICTS IDENTIFIED ARE REVIEWED AND APPROVED IF APPROPRIATE AS A PART OF THE BOARD OF DIRECTORS ROUTINE RESPONSIBILTIES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE PRESIDENT, WITH SUPPORT OF THE BOARD OF DIRECTORS, PERFORMS AN INFORMAL REVIEW OF KEY MANAGER SALARIES FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE PRESIDENT, WITH SUPPORT OF THE BOARD OF DIRECTORS, PERFORMS AN INFORMAL REVIEW OF KEY MANAGER SALARIES FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE ORGANIZATION MAKES ALL FEDERAL INFORMATION FILINGS AVAILABLE UPON REQUEST. VARIOUS COMPANIES MAKE THE FEDERAL FILINGS AVAILABLE VIA THE INTERNET. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | PART III: Briefly describe the organizations missionThe Hereditary Angioedema Associations (HAEA) overall goal is to be the force behind (1) thwarting the potentially fatal and debilitating nature of the HAE, and (2) enabling our patient community to achieve life long health. We are a national patient advocacy organization that focuses on: Increasing HAE awareness and education; driving progress in clinical care; helping patients gain access to and reimbursement for optimal treatment; maintaining a strong presence in the health policy legislative and regulatory environments; and fostering molecular level and translational research that features searching for a cure. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990 governing body review Part VI line 11 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Conflict of interest policy compliance Part VI line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | CEO executive director top management comp Part VI line 15a |
Document Assets
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Filings
Displayed year
2015 • Form 990Detailed filing. Detailed filing data is available for this year.
- Assets
- $6,266,333
- Liabilities
- $743,677
- Net assets
- $5,522,656
- Revenue
- $5,409,526
- Expenses
- $4,815,529
- Net income
- $593,997